The nation’s ability to combat emerging infectious diseases and chronic health conditions will be hamstrung by the Trump administration’s attempt to limit access to federal healthcare data, according to medical experts.
Federal agencies scrubbed healthcare data from their websites in January in an attempt to comply with President Donald Trump’s executive orders on sex and gender; diversity, equity and inclusion; and foreign aid.
After Trump signed the executive orders, many widespread, large-scale national health surveys, indices and dashboards went offline on Jan. 31. These data sources inform research, policymaking and medical decision-making.
By Feb. 2, some landing pages returned online with warning messages that the website’s contents had been or would be modified to comply with the executive orders. Following a lawsuit by Doctors for America, U.S. District Judge John Bates on Feb. 11 directed the Trump administration to reinstate certain data on HHS, Centers for Disease Control and Prevention and Food and Drug Administration websites, noting that lack of access to such data impaired medical treatment.
The ruling followed a letter sent by nearly 80 members of Congress to the director of the White House’s Office of Management and Budget insisting the Trump administration restore health data, which lawmakers called “essential to government accountability, public and private sector research, and the work conducted by businesses and non-profits across the country.”
Read on to learn more about the health data purge’s greatest impacts.
Reduced ability to understand and control infectious diseases
In its complaint, Doctors for America said the executive orders prevented a physician from accessing critical CDC resources to address a chlamydia outbreak.
“In the short time that important web pages were removed from the websites of major public health agencies, our members have seen firsthand how dangerous it can be to practice medicine without critical clinical information,” Christine Petrin, president of the board of directors for Doctors for America, said in a statement on the temporary restraining order.
The health data purge also hampered access to key tools used to respond to infectious diseases.
During the pause, the CDC temporarily removed access to AtlasPlus, an interactive tool that many public health professionals, policymakers, providers and others rely on to respond to infectious disease outbreaks.
AtlasPlus features nearly 20 years of surveillance data on HIV, viral hepatitis, sexually transmitted infections and tuberculosis, allowing users to create customized tables, maps and charts. Users can also view social determinants of health alongside surveillance data on each disease, making it easier to determine which groups may be most vulnerable.
Providers say it’s essential to ensure reliable access to such information.
“The removal of datasets and guidance from the Centers for Disease Control and Prevention (CDC) and National Institutes of Health (NIH) websites to comply with the President’s recent executive order puts the health and wellbeing of patients at risk and makes it more difficult for physicians to provide quality care,” according to a joint statement by the American Academy of Family Physicians, the American Academy of Pediatrics and others. “These resources are not just academic references – they are vital for real-time clinical decision-making in hospitals, clinics and emergency departments across the country.”
Although it’s unclear exactly how the Trump administration’s changes could affect future access to infectious disease and related data, the long-term consequences could be dire if there is less information about which populations are most vulnerable to infection, said Susan Polan, associate executive director for public affairs and advocacy at the American Public Health Association.
Limited access could hamstring the nation’s ability to combat public health emergencies, such as the COVID-19 pandemic, which disproportionately affected specific populations like older adults.
It’s especially worrisome because state and local public health agencies rely on federal agencies for funding, data collection and aggregation, which allows public health professionals to identify the source of an infectious disease outbreak, Polan said.
If infectious disease-related data becomes “siloed” across 50 states — or “even worse,” 3,300 local health departments — it would be challenging to identify the source of an outbreak, such as the ongoing tuberculosis outbreak in Kansas or the measles outbreak in Texas, Polan said.
In some instances, it may even be difficult for public health officials to identify when illnesses are connected instead of isolated incidents, such as during an E. coli outbreak, potentially obfuscating the outbreak entirely and hampering their response, Polan said.
Hampered ability to understand and control chronic conditions
The Trump administration also temporarily removed access to the CDC’s Behavioral Risk Factor Surveillance System, the world’s largest continuously conducted health survey system, which provides detailed information on obesity rates, access to breast cancer screenings, vaccination rates and the share of people with pre-existing conditions.
It’s beneficial for understanding health issues in low-population states and rural areas because it collects data in every state, according to KFF.
The CDC also temporarily removed access to the Youth Risk Behavior Survey, which tracks behaviors like smoking and exercise habits that can influence high school students’ health and social outcomes.
“Recently, the YRBS has asked respondents about their sexual orientation and gender identity, and the data has been used to highlight substantial mental health disparities among LGBTQ+ high school students, compared to their non-LGBTQ+ peers,” KFF said.
While federal officials reinstated BRFSS access, including sexual orientation and gender identity data, some of that information could disappear or stop being collected, making related research difficult or impossible.
A message on the BRFSS homepage says, “CDC’s website is being modified to comply with President Trump’s Executive Orders.” Additionally, the Trump administration posted a message on the Youth Risk Behavior Surveillance System homepage stating “any information on this page promoting gender ideology is extremely inaccurate and disconnected from the immutable biological reality that there are two sexes, male and female.”
Without precise information about who is getting sick and where, it could become increasingly difficult for providers and payers to carry out population health management and value-based care initiatives that improve health outcomes and lower costs.
“It’s going to waste more money,” APHA’s Polan said. “People are going to be harmed.”
Worse health policy, diminished trust in healthcare
Many experts worry that limiting the type and quantity of health-related data collected by federal agencies and restricting access could lead to worse health policies and diminish trust in the U.S. healthcare system.
The federal government should collect as much health-related data and information as possible to ensure policymakers are well-positioned to develop and implement effective health policies, regardless of their political or policy preferences, said Brian Castrucci, president and CEO of the de Beaumont Foundation.
Decisions about interpreting and using that information should occur during the policymaking process, not during data collection, Castrucci said.
If the Trump administration stops collecting or sharing certain data for ideological reasons, “the bias is baked in from the start” because “measuring questions have become policy questions,” Castrucci said.
“Let the policymakers make the policy,” Castrucci said.
During the COVID-19 pandemic, the first Trump administration directed health systems to report COVID cases and intensive care unit capacities to TeleTracking Technologies, a private company, instead of the CDC. That led to the loss of real-time COVID data and widespread confusion. The administration later came under fire for improperly awarding a federal contract to the company, which had ties to the Trump Organization.
“The legacy of COVID is that we politicized basic information,” Castrucci said. “We couldn’t even get a case count.”
Further politicizing health-related data could create lasting, potentially irreversible damage.
“If the belief in the veracity of the data is dependent on who sits in the Oval Office, then we’ve lost any sense of information, of data, of objectivity,” Castrucci said.
